Body & Fitness

Kiwi women with HIV: Mum of two speaks out

“After carrying a huge burden of shame, I knew it was time to rid myself of the weight of secrecy,” she tells.
Melinda SusantoWoman's Day

When Melinda Susanto was told she had the HIV virus 11 years ago, she had two questions for her doctor: “Will I die?” and, “Will I ever have children?”

“My mum was sitting beside me and she burst into tears,” recalls 33-year-old Mel.

“It was a whirlwind. My doctor didn’t have any answers and I had to wait two weeks for a specialist appointment. It was the longest fortnight of my life.”

Mel thought she’d been handed a death sentence when she was first diagnosed in 2006.

“I hardly knew what HIV was. My only knowledge of the virus was as a child when I crossed the road in Hastings to hug Eve van Grafhorst,” she says, remembering the little girl infected with HIV whose family moved to New Zealand because of discrimination in Australia.

But more than a decade after being diagnosed, Mel has married the man she loved and gone on to have two healthy children, Liro, five, and two-year-old Kirana. “They fulfil my life and make my world go around,” says the stay-at-home-mum, who grew up in Hawke’s Bay and now lives in Wellington.

Apart from fatigue, Mel’s physical health is stable and her viral load is undetectable. Just as important, though, she’s stepped out to share her personal story, lifting the stigma of HIV and dispelling the myths as a member of the Positive Speakers Bureau, a platform for HIV-positive people to help promote awareness.

“After carrying a huge burden of shame, I knew it was time to rid myself of the weight of secrecy,” she tells.

Back in 2006, Mel moved to Indonesia to teach English and fell in love with Dali Susanto, now 30. The couple were living in the Javanese city of Yogyakarta when an earthquake struck, killing nearly 6000 people and leaving 200,000 homeless.

“We woke in the wee hours to find one wall standing on our house,” she tells.

For weeks, they helped with the rescue operation, but Mel was admitted to a local hospital and diagnosed with dengue fever, a mosquito-borne viral disease. She spent a week hooked up to a drip and still wonders if it was how she contracted HIV.

Once strong enough, she returned home to Hastings to recover with the support of her mum Carolynne Riley, 58.

She recalls, “I was exhausted, sick and traumatised after the earthquakes, and I just wanted to come home.”

Dali and Melinda

She had a check-up at the doctors and asked for blood tests. “I said, ‘Just check my blood for everything,’” she tells. “I remember him saying, ‘Even HIV?’ I said, ‘Yeah.’”

Calling Dali in Java after the diagnosis was one of the hardest things she’s ever done.

“I thought he’d run for the hills,” she admits. “I didn’t know if I got it from him or he got it from me, but I knew he needed to get tested.”

But Dali told Mel, “Don’t worry, I’m not going anywhere – I will support you.”

Dali tested negative for the virus and Mel returned to Java to be with him, but says she didn’t handle things well. “I was drinking, partying and trying to forget,” she recalls.

“It was a time of grief.”

The couple married in Java and returned to Aotearoa, but Mel was living in isolation and became depressed.

“I kept my secret to myself for a long time and it was a heavy burden to bear,” she says.

The first step forward was contacting the Aids Foundation, who put her in touch with the support organisation Positive Women. “After feeling so alone, I began to make life-long friendships with HIV-positive women from all walks of life – grandmothers, young women and mothers.”

For her and Dali, the choice to have children wasn’t made lightly. “I did a lot of research,” tells Mel.

“I knew there was a less than one percent chance I would pass on the virus if my viral load was undetectable and our desire to have a family was greater than that.”

Liro’s birth in hospital wasn’t a positive experience and last year Mel returned to speak to the clinicians about it. “Nurses wore double gloves, some didn’t want to do my blood tests and they called, ‘Mel Susanto, HIV-positive,’ down the hallway from the nurses station,” she says.

Mel decided to have her second child, Kirana, at home with the support of a midwife.

“Dali handed her to me and Liro was giving me sips of water. It was beautiful.”

Although Mel and Dali separated earlier this year, they remain friends and co-parent. In keeping with her decision to be upfront, Liro and Kirana have accompanied her to speaking engagements with the Positive Speakers Bureau.

“I don’t hide anything from them,” she asserts.

“They know Mummy has a health problem but is well at the moment. First and foremost, I’m Melinda, a wife and mum of two beautiful children, and I also happen to be living with the HIV virus.”

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